Mama was helping holder her arm from flailing in order to take the pic. Pink Pather strategically located so we could get our kids a pic because they wanted to see Hannah with as few tubes and leads as possible!
28 friggin’ days in the PICU, seriously. I am so ready to get the heck out of there!! I can’t believe tomorrow will the beginning of week 5 already.
Daddy took the red-eye here and got here at 6 am yesterday morning. Having him here has been everything I needed. Support, friendship, a laugh, a hug, a co-fighter, and just my best friend.
I don’t think I prepared him very well for what Hannah was really like yesterday, as seeing her made him very emotional. I can count the number of times I have seen him cry in our 14+ years together on one hand. So it broke my heart when I saw how much it affected him. But once he realized what was going on, he did what I have been doing — wipe the tears and get on our game face. Our little girl needs us to fight for her — now she has both of us there for her.
Facebook update, yesterday night:
Hannah still moving constantly. Second neuro team confirmed chorea mopvement disorder. Hannah had MRI at 130pm today, results hopefully tomorrow. Scheduled for echo on Monday to rule out strep infection. Daddy is here…exactly what I needed 🙂
We got the results of Hannah’s brain MRI today. No focal issues, which is the fantastic news. However, there was mild-to-moderate volume loss. It could be progression of her Gaucher’s disease, it could be in relation to being sedated for a month and having fluid build-up around her brain. It is not known. I was kind of annoyed when Neurology showed up saying “We should not hang our hat on these results” and to redo the MRI in about a month to see if there are changes. Daddy and I were both like “What the hell does that mean?” It obviously means something –whether it is a major, minor, or benign issue. There is a reason Hannah’s brain is atrophying.
We had a fantastic conversation with our fellow today. We haven’t seen him in a few weeks, but he was the one that was on the first week we were in the PICU. He has a very interesting theory as to why Hannah required so much medication, “enough for an adult,” and nothing really worked. It also related to her choreoathetoid movement disorder. What he said made a LOT of sense to us. However, I don’t feel comfortable sharing it here until we learn more if it is a possibility (I would hate to post it and then someone searching for info come across it and think it is ‘fact’ and then find out it was not really on target.).
As a result of this conversation, he asked if I could give him the contact info for Dr. Sidransky at the NIH to see if she could answer some questions about his theory. Ironically, she is at an international movement disorder conference outside the country, and she asked us to take a video of Hannah’s movements and send it to her. She is going to share this with some of her colleagues there. We sent it just a few hours later after taking it on Daddy’s cell phone. Hopefully this will either lead to something either leaning towards proof of this theory or refute it.
We are almost done weaning Hannah’s IV sedation meds. All that is left is 0.25 pentobarb, and that will be discontinued tomorrow.
Tomorrow, they also will be testing Hannah on the CPAP on her vent and eventually get her off the vent and onto a humidified trach collar with oxygen connector. Also, occupational therapy and physical therapy orders are going to be put in to start getting Hannah back to being Hannah. Lastly, Wound Care will also be visiting tomorrow to help with Hannah’s diaper rash (from a lot of acidic diarrhea after forgetting to cancel her Colace orders for 24 hours), her Gtube site for regular care, and a bruise/rash under her chin that has developed from the trach/vent holder.
If all goes as hoped, and I am not betting on this because things change constantly with her, but we MAY be able to be transferred out of the PICU to the PCU (step down unit) midweek. The goal is to get her off the vent and off the IV sedation meds, and we are working on that.
Hannah looks like such a little, peaceful angel in that photo. I am so sorry that her reality is still far from that. :'( I’ve got my fingers crossed for that “interesting theory” to work out and for Hannah to be well enough to get to the PCU! We all want our old Hannah back! Love you all!
Like Cristina… fingers crossed for the theory to work out.
Glad they did not find anything adverse with the MRI.
Your Hannah is a very pretty girl. May God shower her with his choicest blessing.
Wow, looking at that photo of Hannah you would NOT think this child has been thru all that she has gone thru. She looks so peaceful and just like a baby sleeping normally. I wanna reach out and take her in my arms and hold her myself.hat a beautiful child. I cant wait to come to vegas to see her and all of you.
Hope shes gets transferred to PCU soon so you can have her back again.
Glad Bobby is there with you, it must be so comforting.
Our prayers are with you!
Love,
Susan
Ohhhhh what a sweet photo. No matter what’s going on in her little world, she still looks like such a sweet little angel there. I swear she is smiling! Maybe having dreams about getting out of the PICU too! That one’s a fighter, like her Mommy. You hang in there. I can’t imagine this long ride you have been on, but I’m hopeful you are over this hump and can get her on the mend, and home to Vegas soon!
Dear Carrie you so inspire people across the World, just like Hannah inspires us all. May we now inspire all your family by saying we care so much and you families fight is everyones fight.
With Care
Honey I’m so sorry to see you go thru this! So much of it reminds me of what I went thru. Emma was in the ICU for 64 days and not out of her bed for 38 of them once. But something you wrote about the medications, is there a way you could share with me his theory…Emma was on so much sedation meds the dr would say 5 adults could be put down with the amount she was on…also since Emma went thru transplant and did this 10 years ago (wow that was odd to write) so much has changed and they learned from her case so hopefully you are getting useful information from my baby girl to yours!!!??? Sending hugs and prayers! Hang in there mommy